About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, June 25, 2011

Hey Everyone! I know a lot of you have been anxiously awaiting my next blog, to find out what is going on, so here goes! So, how much detail do you want? I love to write, so if you have the time, I have the specifics! Pull up a chair and your favorite drink and join me on this journey!

I had come to the conclusion that I would not be able to wait until my regular appt. w/Dr. Yakes after July 4th - so Celia quickly made arrangements for us to head to CO! I believe we headed out on a Wed. - driving from Corpus Christi to San Antonio, TX! The flight would leave San Antonio and get us to Denver in a couple of hours. Soon as we had arrived in San Antonio, I had started working on making sure I would have a humidifier for my trache once I arrived @ the hotel in Denver. Lately, we had been staying @ the Marriott Suites on Monacco that had a kitchen area and a couple of bedrooms. This time though, w/the last minute notice, we ended up having to stay @ the Marriott Tech Center hotel, that Celia ended up liking better. It was a nicer hotel, but no kitchen, darn! Anyway, with all the rushing around, I had forgotten the paper w/the information I needed to get my trache equipment set up, and even though I called the Apria company that I needed to be in touch with, no one seemed to know what I was talking about or what I needed right off! Called Mark for help and there is so much paperwork everywhere that he wasn't able to help me out right away either. Once arriving in Denver though, I tried again and could not believe my luck when I actually reached the SAME GIRL that had been on call the last time I needed the same equipment and she remembered me! What luck! Her name (forgive me if I misspell it) is Shermaleen and she is fantastic! Right away she gave me all the information I would need and I told her what hotel we would be @ and Shermaleen said she would do her best to get me what I needed! By this time it was getting pretty late and I thought there was no way this could be done in time - but you know what? Shermaleen made it happen! Yay! Wow! How do you spell "relief"?! See photos of Shermaleen setting up equipment in hotel room! I'm convinced if it had not been Shermaline on call, my equipment would not have been delivered!

I was to show up @ Swedish the next day (Thursday) by 1:00 p.m I believe to get set up for procedure. I had been told I could have a "light breakfast" @ 5:00 a.m. so I wouldn't go all day w/out eating/drinking - but I didn't want to go there! I know I was added on to the schedule, but do you know what time I was finally taken into surgery? By 8 p.m.! Dr. Yakes himself came to transport me to the surgery area! Can you believe it? To boot, their schedule was just packed and they had only 1 instead of their usual 2 surgery rooms available due to reconstruction or something going on! I remember being concerned that when I get out of surgery that I never have that little cap over my trache tube that allows me to talk or clear my throat and I spoke to Quinn, the Anestheseologist about it. Course first thing I want to do when I wake up is move and all the nurses jumped @ the same time telling me not to bend my leg because of the arteriogram Dr. Yakes had done. So, I start praying for patience to help me through how long the process will take before I'm out of recovery and into a room, etc. One of the male techs/nurses/transporters (?) was trying to make conversation and kept saying to me, "That is such a cute bear, what is her name"? The other nurse kept telling him, "she can't talk right now". He was of course referring to Saba, that I always take w/me on these procedures for love and comfort!

The floor nurse came and introduced herself and I remember her saying something about taking some of the gauze out of my mouth. UGH! No wonder I was feeling all claustrophobic - I had a big wad of gauze inside my mouth! Of course there was more fun to be had - with all the swelling, I would not be able to swallow for a few days! This meant staying in the hospital longer than the usual overnight stay! There is no way I would be released unless I was able to swallow some of my medication in pill form. In some photos, you can see I'm wearing a "hose" like wrap on my arm to keep my IV intact w/out it moving so much. Need to have that for all my meds!

I remember Dr. Yakes saying something about there being a big vein @ the back base of my tongue, and that is where the bleeding had been coming from. So, of course in order to take care of that problem, he had to shoot the area w/16ccs of alcohol, which means swelling and discomfort! I had Dr. Yakes and his P.A. Kelly come by several times during my whole stay to check up on me! I had to laugh @ one point because the nurses were even in awe that Dr. Yakes was actually there in person! They would joke about there being a Dr. Yakes sighting! Celia just missed Dr. Yakes a couple of times, but I grabbed my phone and took a photo, although not a very good one! He had asked if I wanted him to bring me some books, because he saw I was reading and was enjoying myself. Told him that Celia was out doing the very thing for me, so no bother. He even offered to put another blanket on for me because it was a little nippy in the room!

I just have to say how Celia just went above and beyond the call of duty during this trip. I felt so bad for what I was putting her through, but her thoughts were only of how she could make things better for me! Shortly after I was put in a room, I didn't feel like doing much of anything! Celia would ask me if I wanted the TV on or whether I wanted to walk down the hall and my answer was always no. I felt like a zombie and didn't want any added noise, distractions or anything going on! Later, I did take her up on walking down the hall! Saw the bulletin board of photos of some of my favorite nurses! Course there is Dave LaBadie - he is one of the "original dream team" - from the very first procedure I had @ Swedish! To the "original Saba", and others that have become friends like Zufan, Becky, Judi, Nate and Victoria! Victoria always has a smile and remembers me!

Little did I know the fun was just beginning though! Dr. Yakes said for the next couple of weeks that I could only have "soft food" and I wondered what he really meant by that. He mentioned eggs, mashed potatos and pudding. I started figuring out anything I didn't have to chew, like a piece of meat - things like jello and yogurt! You can see where I have a syringe in my mouth - one of the nurses suggested I try that to get some food in my stomach!

I want to get this blog out, so I'm just writing and putting all the photos I have between my phone and what Celia took w/her camera! Would you believe I had a small therapy dog come by? The lady that trains him even gave me his card, but I can't find it right now to tell you his name, but he is a Lasso Apso (sp?). Our dogs Hanz an Bella are often mistaken for this breed! Speaking of our babies - I was happy that Celia was w /me on this trip, since I ended up having to stay longer than expected, @ least Hanz and Bella were home with Mark!

After getting home from Colorado, I started noticing it was hurting to swallow. I knew I wanted to see my primary care physician again before heading back to work, to make sure I had plenty of refills on all my meds and was taking everything correctly! My tongue also felt like it had been cut many times with a razor blade - ouch! When I went to see my PCP, Dr. Boynton, he diagnosed me as having "thrush" 0r a yeast infection in my mouth from all the steroids I had been taking! Yikes! Dr. Boynton said it would be @ least 48 hours before I would feel better, but it turned out to be more like 4 days! My hands were also pretty dried up from the steroids, causing cuts and bleeding! Ooooh that reminds me, I had a terrible bleed from my mouth a few days ago! I was using a Q-tip to get food away from my gums and boy that bleeding came fast and furious! Had to pack my mouth with gauze to have it finally stop! I'm posting this and will add to it as I remember more!

Cyndi

Those steroids sure are a catch 22! On the one hand, I knew Dr. Boynton wanted me to wean myself off of them, little steps @ a time - but I also felt like I couldn't because they were helping with the swelling on my tongue! Course if I didn't wean off of them, not only does it slow the healing process, but then the next time I would need to take steroids, then they wouldn't work for me because I didn't get off of them like I should! Ugh! Stop the insanity already!

Meanwhile, I'm up @ all hours of the night w/the steroids, keeping Mark up and every time I get up to get a snack, the dogs get up and follow me into the kitchen or wherever I'm headed! I've been getting by on a couple hours sleep a night and I try and make up for it during the day here and there!